A Road Less Travelled – Living with Neuroendocrine Cancer

More Results and Getting Ready to Start a New Part of my Journey

A few days after I published my last blog on the 22ndJune I got a call from my consultant to give me an update on my gallium scan results. it confirmed beyond any reasonable doubt that there has been some progression with my primary in my small intestine, as well as the lymph node that sits on my main artery, so they would like to proceed with PRRT treatment asap if I was agreeable. For me the answer was a no-brainer, and with I must admit a certain amount of relief I agreed to go ahead. At this moment in time it is my best option when it comes to a better quality of life, as unless my body gives us no other option, surgery is not the best solution for me, my first treatment will be 17thJuly.

I must point out at this stage that I am very lucky as my healthcare insurance will cover this. In 2015 just after I was diagnosed NICE took this treatment off the cancer drugs register and we do not know when or indeed if NICE will put this back on their list of available treatments for NET patients. A decision was expected by this time last year but it appears the jury is still procrastinating. Below is a paragraph taken from the 2016 study published by the Society Of Nuclear Medicine, based on 72 NETs being treated with PRRT over the course of 33 months.

Results showed that PRRT led to a 68 percent rate of overall disease control, with median progression-free survival not achieved at the end of follow-up. Researchers were able to determine that 73 percent of low-grade tumors responded to treatment, while only half of high-grade tumors responded. Histological grading, SRI and chromogranin were not able to predict PRRT effectiveness. The NETest exceeded SRI evaluation and predicted both therapy response and non-response. The predictive response index of select NETest genes associated with metabolism, signaling and grading was found to be more than 90 percent accurate.

So I hope with all my heart that they make the right decision soon and place it back on the register, as for many of us our options are very limited when it comes to treatment, and England is the only country within the UK now that does not offer funding for it.

Therefore in the last few weeks I have been trying to cram in as much socialising as possible due to the fact that I could be “persona non-grata” for up to 2 weeks. You know me (if you are a regular reader of my blog), I don’t like to miss out on anything!! So it started off with a Saturday supper date at Greg & Shelle’s, it is so nice being able to sit out in the evenings to eat whilst enjoying this lovely weather. Their new puppy Willow is also settling in nicely and has got her paws well and truly under the table. She is a confident little girl, who loves to play ball and dig, and boy can she move. Buddy is going to have to put in some serious work to keep up with her.

The following week I had my new patient consult with the nurse at my new GP surgery, and I think I have made the right move. I thought I would have been in and out in 10 minutes, but I was in there for a good 40, I didn’t feel rushed and we had a good natter about my NETs and life in general.

I was also lucky enough to be invited to NET Patient Facilitators day in Leamington Spa, it was a very hot but enjoyable day. I got to meet lots of NET natter facilitators from across the country and made some new friends, which is always a bonus:-) We discussed how our meetings went, looked at new ideas and exchanged a few too. We also had a talk on NETs from Dr Shah who is the lead medical consultant at the QE in Birmingham. Needless to say on the Saturday, I was a very tired and a bit sore, although to be fair my tiredness is also being further aggravated even more by broken sleep due to the heat. I will not complain though as the sunny days make up for it, even though I spend most of my time outside in the shade.

At the beginning of July I was also invited along to our grandsons first sports day at nursery, which I must say was more like a free for all, where a group of 2 to 3 year olds ran riot around some obstacle courses like mad things, ate ice cream and got a certificate. I did think before going that they would have done structured races, but of course they are a little bit to young to grab the concept of competition, but I loved every minute of it and so did he. It’s hard to believe that he will be 3 this August, the time is going far to quickly.

Then before I knew it, it is was time for our annual pilgrimage to Snowden, which to be honest I was a bit apprehensive about this time, as last time we were there I was confined quarters for the majority of the weekend due to bad pain and bloating. Thankfully though this time everything behaved and I had a great time, Ade was also happy bunny as he got to give his new car a proper work out on the Welsh mountain roads, the weather was brilliant and England got through to the world cup semi-finals for the first time since 1990.

On the morning before the game we did a lovely hike from the hotel up to the Snowden Youth hostel at Pen-y-Pass, then walked along the Miners track to Llyn Llydaw lake at the bottom of the mountain. It was only a 5 mile round trip, but for me it was hard work, especially the first part up to the hostel. I needed a good sit down before starting the next part of the walk, and when we got back I was beyond tired, but pleased that I had managed to do it. Although it never ceases to amaze me the impact NETs has had on my stamina, I walk all the time, but put a hill of any sort in front of me these days and I struggle. It is sooo annoying, so it was just as well I am not a football fan I as needed a long lie down when we got back to recharge my batteries, although I did hear the cheering from the bar!!

After the match I met the rest of guys by the outdoor pool, which is a natural pool in the back garden of the hotel. Ade, Jan and Tim celebrated the win by going for a swim, and one stage they were joined by a couple of service dogs who were training to be guide dogs. It was very funny watching them all, but you really needed to be there to appreciate their antics. We all got a good drenching from the dogs, but nobody minded as they were having so much fun.

On the Sunday we met up with our daughter Judith, her husband Kyle and our grandson Arthur. They had camped overnight nearby, as the plan was that we would look after Arthur whilst they went up Snowden with Judith’s work colleagues. They were doing the Three Peaks Challenge that same weekend to raise funds for the NET Patient Foundation. However, as it turned out they were able to do the ascent a lot earlier that expected, so Judith and Kyle weren’t able to join them, and by the time we had had breakfast and booked out of the hotel they had completed the climb and were on the way home. It was a shame we missed meeting them at the end to say thank you personally, but it was a great achievement and they raised lots of money for us, over £2000 so far. If you would like to know more about their challenges or donate this is a link to their blog and just giving page – Codeweavers Conquers Three Peaks

To make up for missing the team, we went over to Tim’s caravan in Criceith where Arthur had his first fishing lesson with his Moopa. After the first few casts he was more interested in eating the sweetcorn out of the tin rather than using it to catch fish, swinging on the monkey bars and zooming down the slide, but it is always good to be able to spend quality time with the family. Before heading home we popped into the town centre for a quick drink by the sea, true to form though over the next few days I was quite tired and sore.

I am happy to report too that Buddy is responding well with his 1-2-1 training, and gets really excited now when we turn up, unfortunately though we had to give last weeks a miss due to him having an upset tummy. So he will have to wait until I am allowed out in public again before we go back. Also our trainer is not too sure if we can cure his kleptomaniac tendencies, it is more of a case of keeping everything of value out of his reach. Needless to say the house is looking a tiny bit tidier, and hopefully with time stuff will become less desirable to him, fingers crossed anyway on that one.

Yesterday he also got to do some doggy socialising, as we held a BBQ for family and friends for the world cup final, it was also my last chance to see everybody for the next couple of weeks. So as well as friends and family, we had three dogs running around, they had a great time, we all did. He had spent Saturday afternoon in the garden with Willow, and on Sunday he also got to meet Henry who is a rather handsome black Cockapoopoo. Buddy was the oldest and biggest of the bunch, but Henry and Willow were definitely more agile and faster, they all got on really well too which was good as they will hopefully all be spending a lot of time together. Today though he is well and truly pooped, and when I left this morning I got the distinct impression he was looking forward to peace and quiet!!

Finally here I am at the Christie Cancer Hospital in Manchester all settled in my room, which is my home for the next couple of days. We arrived about 3pm this afternoon I had my blood tests and swabs done, and met my PRRT team for tomorrow. The staff on the ward are all lovely, and nothing is to much trouble. The hardest part so far has been saying good-bye to my husband. I know I will see him again on Wednesday afternoon when he comes to take me home. But is could be up 2 weeks before we can have a kiss and a cuddle again depending on my radiation level, so fingers crossed it makes a quick exit. He has also purchased a Geiger counter so as he can measure the levels himself!! I will keep you posted on my progress.

Good luck, will be following your journey.
You sound like a strong person but you will not be feeling so now.
But when it is over you will say WOW I did it!! I am strong.
We are all here because these are journeys together.
Bridget x